With the warm weather comes danger of Lyme disease-bearing ticks

“One of the problems is that many people don’t get the rash and most people have no idea they were bitten,'' said Dr. John Goldman

Rachel Pease still suffers with lingering joint pain and loss of energy four years after being diagnosed with Lyme disease.Courtesy of Rachel Pease

Rachel Pease was busy gardening and discarding weeds into the woods near her Carroll Township home when she unknowingly picked up a hitchhiker of the four-legged variety – a deer tick.

“I must have been bitten by a tick then, although I never found one on me. Within two weeks of that date, I started experiencing flu-like symptoms and extreme fatigue, falling into bed exhausted by 7 p.m. I actually thought I was pregnant again,” said Pease. The 34-year-old considers herself very lucky that she developed several bulls-eye rashes, a telltale sign of Lyme disease.

Pease went to her family doctor and was put on a 30-day treatment of doxycycline, the standard antibiotic to treat Lyme.

Lyme disease, caused by the bacterium Borrelia burgdorferi, is abundant in the midstate. Pennsylvania ranks first in the nation in number of confirmed cases, with 4,146 cases in 2013 – down from a high of 5,730 confirmed cases in 2003.

Pennsylvania’s rate of incidence is seventh in the nation, with 32.5 confirmed cases per 100,000 people. New Hampshire ranks first in the nation in incidence, with 75.9 confirmed cases per 100,000 people and 1,002 actual confirmed cases.

Cases prevalent in the midstate

York County has the third highest number of confirmed Lyme cases in the state, with 328 cases in 2012, according to Pennsylvania Department of Health. That’s down from a high of 468 cases in 2003. The highest number of cases statewide was in Chester County, with 610 cases, followed by Bucks County with 376 cases. Cumberland County reported 119 cases in 2012; Dauphin County had 111 cases and Perry County reported 23 cases.

“Our numbers are stable at a high level,” said Dr. John Goldman, infectious disease specialist with PinnacleHealth System in Harrisburg. “The highest number of cases was seen several years ago, but it’s still 10 times higher than 10 years ago.”

Judging by the number of calls and emails she has gotten from people who have been bitten, this season already seems bad, according to Gail Sheffer, board member of the York County Lyme Disease Support Group.

“I started getting calls at the end of February,” she said. “It appears all this snow actually insulated the ticks instead of killing them and as soon as the snow was gone, they were out.”

Prevention important

Especially during April through October – tick season -- Goldman recommends that people wear light-colored clothing that makes ticks easy to see, have shirts that cover the wrists and pants that can be tucked into socks whenever they go into the woods or venture off the beaten path. He also recommends using an insect repellent with DEET, such as Deep Woods Off.

“And when you come inside, do a thorough tick check on yourself,” he said.

Dogs can also catch Lyme disease, so it's a good idea to check them for ticks, too.

The best way to remove a tick is with tweezers – and it’s a myth that the head of the tick must be removed. In fact, if it’s a struggle to get the head out, it’s better left in, he said.

“People try to smother the tick with Vaseline or get it to back out, but that causes the tick to get distressed and it throws up. Most of the bacteria is in the foregut and so it gets dispersed when it throws up,” Goldman said.

To transmit the bacteria, the tick must be attached for 24 to 48 hours. Typical symptoms include fever, headache, fatigue, and a characteristic “bull’s eye” skin rash.

Rash often absent

“One of the problems is that many people don’t get the rash and most people have no idea they were bitten so they aren’t associating their symptoms with a tick bite,” Goldman said. “By the time they get to me, they have had it a while.”

Goldman said he thinks primary care doctors are getting better at thinking about Lyme disease as a possible cause when people present with the classic symptoms, especially if they have flu-like symptoms in the summer.

However Sheffer said that many of the people calling her are frustrated, telling her they went to their family doctors but they refused to prescribe antibiotics because there was no rash.

“Doctors are saying they want to wait to see if they develop additional symptoms, which is the worst thing to do,” Sheffer said. “They are afraid of over-prescribing antibiotics, but they are over-relying on a bull’s eye rash.”

Goldman said doctors should treat right away when someone has acute Lyme disease symptoms, rash or not. He doesn’t wait for a blood test confirmation in early Lyme cases because they often come back falsely negative. Most cases of Lyme disease can be treated successfully with 14 to 28 days of an antibiotic, such as doxycycline that may also treat accompanying tick-borne diseases.

For someone who has lingering symptoms like Lyme arthritis, multiple Lyme rashes or Bell’s palsy manifested as temporary paralysis on one side of the face, however, a positive blood test is needed, he said. Left untreated, infection can spread to joints, the heart, and the nervous system.

Symptoms can linger

Sometimes even 30 days of treatment isn’t enough. Pease found that out when her symptoms flared up again. Her family doctor “scoffed” at her request for another round of doxycycline but reluctantly prescribed it.

Pease sought out a “Lyme literate” medical doctor – those who are knowledgeable about chronic Lyme – and ended up being prescribed a higher dose of doxycycline, other antibiotics and monthly intravenous treatments of antibiotics and Vitamin C to boost her immune system. Pease also started an anti-inflammation diet of whole foods, eliminating sugar, gluten, dairy, caffeine, and artificial sweeteners.

It took more than a year of medications until she really felt better. However, in the four years since she was bitten, Pease said she hasn’t gotten back her normal energy and suffers with joint pain in her knees and fingers.

“My doctor advised me that it is possible for the disease to re-manifest itself since the bacteria can hibernate for long periods of time” she said. “I do worry that I could relapse.”

“People are certainly sick and are being affected in ways equivalent to a major illness, but giving prolonged courses of antibiotics doesn’t help and could be dangerous. I’m an infectious disease doctor so I’m biased toward saying people need more antibiotics, but in this case, they don’t help,” he said.

Goldman treats patients much like he treats fibromyalgia (a condition marked with muscle pain and fatigue), with anti-inflammatory drugs, muscle relaxants and amitriptyline to help them sleep, and says they typically get better slowly.

Still, Pease and many other Lyme disease sufferers regard the issue with suspicion.

“This is a disease where, if you trust the advice of the CDC and the mainstream medical community, you may find yourself developing chronic Lyme, which the mainstream medical community often dismisses as nonexistent,” Pease said. “For whatever reason, the mainstream medical community often insists that this is an easily treatable disease even though there are so many people for whom it is clearly not easily treatable.”